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SickKids: Gogo never stops, she never drops; she’s a go-getter

Indomitable 12-year-old girl visits SickKids five days a week for hemodialysis and prevails through treatments, side-effects

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Gowthami Perinpanayagam talks about her experience being bullied after she had an adverse reaction to her treatment causing warts to appear on her body. At age 2, she was diagnosed with childhood nephrotic syndrome.(Marta Iwanek/ Toronto Star)

There may be only one 12-year-old girl in Toronto who can make Toronto Raptor Amir Johnson lean back in his chair at the end of an interview, throw up his arms and smilingly admit to being asked “some tough questions.’’

Gowthami Perinpanayagam — she prefers to be called Gogo, a nickname her friends came up with — beams from her chair at Johnson’s comments, in an interview recorded at SickKids earlier this year and posted on YouTube.

Gogo, who comes to SickKids five days a week for hemodialysis, tells a Star reporter that the interview she did with Johnson, one of several she’s done for fun with celebrities who visited the children’s hospital, is her favourite.

As for what she asks, well, she does research in advance and sometimes questions “just pop into my head.’’

Who wouldn’t want to know why Johnson is so tall, what inspired him to become a basketball player, what he does with his money, and if he has a girlfriend?

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An ebullient girl with a megawatt smile, Gogo isn’t fazed by celebrity. Perhaps it’s because, in her 12 years, she’s had to deal with much more important issues.

Gowthami Perinpanayagam, 12, or "Gogo" as she is called, comes in for hemodialysis at SickKids hospital in Toronto on April 1, 2015. At age 2, she was diagnosed with childhood nephrotic syndrome, a condition in which the kidneys do not function properly. Five times a week, she comes to the hospital with her mom for up to three hours for the hemodialysis. She is being prepared for a kidney transplant, although there is a high chance the condition she suffers from will recur. (Marta Iwanek / Toronto Star) | Order this photo

She was diagnosed at the age of 2 with childhood nephritic syndrome, a serious condition in which kidneys fail to function properly. There can be a genetic component in the origins of the condition, but, in Gogo’s case, doctors aren’t sure why she developed it.

Sometimes, with treatment, the condition will disappear as the child gets older.

But not in Gogo’s case.

Over the years, she has been admitted to hospital for many treatments, undergone various procedures and prescribed a slew of medications.

Eventually a kidney transplant will offer the best quality of life for her, says her primary physician, SickKids’ Dr. Elizabeth Harvey.

Since June 2014, she has been getting hemodialysis, in which a patient is hooked up to a machine which essentially does what kidneys should, that is, filter the blood to remove waste and extra fluid. She and her mother take public transit from their home in Scarborough five days a week for hemodialysis at SickKids which takes up to three hours per visit.

Gogo has also learned to give herself a needle once a day to manage a blood clot she has in her neck, a side-effect of her condition.

“I just do it and it’s done,’’ she says matter-of-factly. “It’s helping me get better.’’

And dialysis, itself, is nothing to fear, says Gogo, who talks nonchalantly to a Star reporter while her blood swirls through tubes.

“You don’t feel anything. At first, when you are starting you might get a little scared because you are seeing your blood. But, by the second day, it was like, okay, nothing bad is going to happen.’’

During dialysis, Gogo talks to the nurses and other children, tries to make up for leaving school an hour early, with the help of on-site TDSB teacher Mary Belkas, goes on her iPad and chats with friends or plays games.

Sometimes she sleeps, because her days are long and tiring.

And, while she loves SickKids, “it’s like my second home,’’ she misses being a regular student and all that goes with it.

“I used to dance; now, I can’t because I come here. I miss the after-school programs. It can get so boring!’’

Nonetheless, she says she is grateful that she no longer has to deal with warts on her face and body, a side-effect of one medication she was on, for several years starting in Grade 1.

“When I was little, when I had the warts, I thought I wanted to kill myself. I would get bullied. I tried to hide myself, but I couldn’t hide.’’ she recalls.

In Grade 4, that medication ended and the warts disappeared. “My life became better… I have made more friends. I felt mad at the people who bullied. We’re not different. We’re all the same.’’

Gogo’s doctor says she is not yet ready for a kidney transplant. She needs to put on weight and be at optimum health before a transplant can be considered. There is also the chance her condition will return with a new kidney.

“She is a delight,’’ says Harvey, who notes that Gogo is “remarkably well-adjusted’’ despite many complications over the years related to her condition and side-effects of medications, such as the development of cataracts in her eyes. One cataract has been removed, and a new lens implanted. Her other eye will also need a lens implant.

Gogo knows a kidney transplant may be down the road for her and she’s “thinking’’ about that.

But, for now, she’s decided she’d like to hold some sort of fundraising event for SickKids and is brainstorming ideas with Child Life specialist Marissa Robicheau, with whom she has a special bond.

“I love her,’’ says Gogo, eyes flashing with enthusiasm. “You can tell her anything, and . . . , if you have a problem, she helps you fix it.’’

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